Anyone else got a child with CHD?

[loismustdieatyahoodotcom]

Just that really. DS is awaiting 2nd operation, been cancelled a few times already so I feel on knifes edge when the phone rings or a letter comes through post. just feeling a bit blergh and lonely.

Hi Lois, yes my dd has CHD. I do sympathise with you, the waiting is just the pits and it's so stressful getting cancelled; you don;'t want them to have surgery but know it must happen and yes bleurgh just about covers it. It seems that cancellations are happening more and more because of pressure of PICU beds.

How old is ds? Does he know he's going in soon?

He's only 17 months and luckily for him and us totally oblivious. one of the reasons for the second cancellation was no picu bed. when it gets cancelled I feel relived yet like I'm waiting for the inevitable. its weird can't describe it. He's not desperate for it just his weight gain has stalled and other minor things. I'll be glad when I don't have to count calories and worry about his eating tbh. sorry just rambling now.

my son has tof and just had his full repair in jan. (he was diagnosed at 16 months and will be 4 in may) I found lots of support on heartline.org.uk on the messageboards

Joined the heart link site a while ago, found it really useful.

Not a child with CHD but I was born with it many many years ago.
Can't imagine how you must feel waiting for his operation

My dd had surgery for a VSD at 18 months. Waiting is so hard. The first time we were phoned to come in for a last minute cancellation I panicked and said we couldn't make it!

My DD (1yr) had her PDA repaired in September. The waiting was awful! I spent everyday expecting her to collapse in a heap. We're still on meds and high calorie milk due to leaky valves but are seeing her cardiologist next week for an echo and review. I'm getting nervous already!

wallace vsd repair here too and hopefully no more ops after bar complications. I also panicked when they rang the first time for a cancellation slot, think i was shocked i said um eh can i ring you back!
Been to specialist again just fior a check didnt get echo do as he wont stay still.
dicdic nurse we are going for op soon hopefully and then on to a dietician as hes tiny for his age and his weight is static so ia sked for a referal. Does the worrying ever end? First if they hjave any genetic chromosomes problems then how they after birth. Then comes is he blue or is he eating enough. Its pants. Although once i was convinced he went blue around his mouth till my DH pointed out he had been chewing on his sock and it was dye

My dd did used to go blue around her mouth, but it wasn't related to her heart apparently!

On the bright side dd's surgery was 10 years ago and just a distant (bad) memory, and she is a healthy 11 year old :)

just a quick update if anyone's interested, DS had surgery wed last week and was discharged Tuesday. The repair was successful with minimal complications.

Lovely to hear that lois. The little ones bounce back so quickly don;t they?

So glad to hear that your ds is out of hospital .

He bounced back v quickly crawling round less than 3 days post op and pulling up round the nurses station . Hopefully we are done now. Amazing staff and hospital.